On the actual testing side I've done very well. WBC from 160 to within normal ranges in about 3 weeks, BCR-ABL1 of 0.2933 on 7 October, 0.08 on 18 November, not quite 6 months into treatment.
I was diagnosed in late May 2019. I started with nilotinib. I don't recall the dose, but the standard 2 pills morning and 2 evening. Within 2 hours of taking the first nilotinib I felt like I'd been hit by a train. That subsided a bit, but any exercise (including my normal chores taking care of livestock) had my heart pounding like it was trying to beat its way out of my chest. I had to work slowly, take breaks, and rely on friends helping me quite a bit. I also had lateral balance issues and gut problems. Looking through my notes from this summer, also jaw pain, headache, sun sensitivity, tinnitus, pulsing in my ears, and rashes. After two months on nilotinib I had a TIA end of July and was taken off.
While in the hospital with the TIA they noted my TSH was up so increased my thyroid med. I'd been on a low dose of thyroid med before I was diagnosed, which was stable and working for me. In fact my thyroid levels were tested as part of the panel of blood tests that found the high WBC in May and were good.
Early August I was put on Sprycel 100 mg. By the end of two months I was so lightheaded I did not trust myself to drive and was getting rides. I also was very short of breath and low energy, tight/pinching chest, odds and ends of funky pain and nausea but that's livable, weak, speaking problems, and dropping things with my left hand. I went for a dose reduction to 50 and got it at my appointment early October. I resolved to wait and give time to see how the reduction panned out. During this time I continued to experience a tight/full chest, some chest pain, difficulty speaking sometimes, odds and ends of pain, and being short of breath to various levels. My normal activities were limited but I was functional. Further thyroid testing with my primary care doctor said I was still low thyroid, but due to some increases in side effects when I increased the medication for that I discarded the increase. Retesting again recently and there is a stronger indication I need to increase my thyroid meds, but again that seems to exacerbate my existing symptoms so again I've had to pull back.
I'm not convinced my case is all that complicated. Certainly I respond well to the drugs as far as reducing the CML markers. I've not had some of the typical problem side effects like low blood counts. But I am having side effects, and some of them are frightening with my increased chest pain, bouts of trembling of my chest, my inability to manage my thyroid properly. The speech and lateral balance are bothersome as well though at least those don't make me wonder what the day will bring. I can live with them if need be. In response to my reporting these problems my hematologist has been consistently dismissive, often openly so, saying these are not side effects of the drugs. This has left me working with my primary care doctor, and then a neurologist and speech therapist (who both feel the problem is the drug), and now I'm being referred by my PCP to a cardiologist and they are trying to figure out what tests for my lungs/heart. Likely an endocrinologist will be next if we can't get the thyroid problem sorted.
In all of this I feel there is a disconnect with the hematologist. I'm not expecting miracles or to feel like I did before I started these meds, but some of these side effects are beyond what I'm willing to just ignore. Until the CML I was one of those annoying folks who popped out of bed high energy in the early morning, no aches and pains. Hell I'd be happy to go back to how I felt the day I was diagnosed. I'd like to be able to have a conversation about these side effects without simply being told it is not because of the drug. I don't doubt my doctor's ability to treat the CML, but I need someone willing to work with me on the fallout of the treatment.
My next appointment is mid January and I plan to ask for another dose reduction, to 20.